There is a well-known saying in Norway that “you have to be healthy to be sick”. I am among those who have felt it. A struggle to get help that began with various health problems in 2014 ended in the summer of 2018 in an MS diagnosis. Facts about Multiple Sclerosis MS is a chronic inflammatory disease in which the body’s own immune system attacks tissue in the brain and spinal cord. MS can cause varying degrees of disability. Some people get symptoms only once, then the symptoms return. Others become severely handicapped. MS affects between 350 and 400 people in Norway each year. Today, around 11,000 people in Norway live with MS. Norway is one of the countries in the world that has the most MS-affected sets in relation to the population. Symptoms can be numbness, visual disturbance, reduced walking function, paralysis of the arms and legs, balance problems, dizziness, problems with fine motor skills and chronic fatigue. MS is more than twice as common in women as in men. MS is the disease that most frequently causes disability in young adults in the Western world. The MS puzzle is not solved. It is not yet known what causes the disease. Presumably, both genetic disposition and environment play a role. MS cannot currently be cured, but can be slowed down and alleviated. Source: MS association Despite the fact that I have always met therapists with a genuine desire to help, I have had to fight to be taken seriously. It is unvarnished to claim that individual assessments have no place in patient care, but for a few patients this is precisely how it is experienced. The discretionary assessments that doctors can make are strictly framed by which forms of treatment are available, and these are largely governed by a political cost-benefit perspective. My illness cannot be stopped by medication. In early 2018, I trained for the Oslo Half Marathon. 4 years later, the ability to run is gone. The legs no longer obey the will of the head as well, and the ailments are slowly but surely worsening. There is no cure. In Norway, MS patients are treated with so-called brake drugs. What these have in common is that they must inhibit the immune system and slow down the development of the disease. These work well for some, limited for others and not at all for a few. I am one of those people with whom anti-inflammatory drugs have a limited effect. I am on my second preparation, but the disease continues to take away important functions. Then I am medically on bare ground. Fortunately, the disease has not yet taken away my ability to work full time. Unlike many people with MS, I do not suffer from chronic fatigue. If I get enough rest, I am able to work 100 percent and well, in a job where I would like to contribute to the community for another 20-25 years. It is completely impossible for me to understand that this is not of great importance to AS Norge in assessing whether I should be able to receive expensive, but effective treatment. Because “standing medically on bare ground” does not mean that there are no other offers in Norway. This means that the Norwegian healthcare system is not willing to let me try this treatment. At Haukeland Hospital, stem cell treatment (aHSCT) is carried out on MS patients through a clinical study that has been ongoing since 2016. The treatment I undergo with drugs costs from NOK 30,000 to NOK 300,000 annually per patient. MS patients are good store for the pharmaceutical industry. The stem cell treatment given at Haukeland is a one-off treatment, which costs somewhere between half and a full million kroner – it is bad business for the pharmaceutical industry. In short, the treatment alternatives I offer in Norway boil down to the sum of health-Norway’s cost-benefit assessments and the pharmaceutical industry’s ball roof on the same health-Norway. The fact that I can contribute a quarter of a million annually in tax for potentially 25 years is not included in the calculation at all. Understand it whoever can! You have to be resourceful to be sick. You must have the ability to understand your own illness, know your rights and fight for them. But you also often have to have resources in the form of good finances or resourceful networks with a great willingness to help with your own funds, in order to carry out the necessary treatment. More and more people are finding, for example, that they have to start Spleis campaigns in order to collect funds for necessary treatment – also for treatment in the Norwegian healthcare system. Minister of Health Kjerkol, Arendal Week 2022 is approaching. Already during the Arendal Week in 2016, the MS Association asked the question “Is Norway a sinkhole in stem cell treatment for MS?”. In other words, your predecessors have done next to nothing to help a large and frustrated patient group, with a serious illness, to gain access to effective treatment in Norway. In the meantime, more and more people have felt compelled to use their own funds abroad in an attempt to slow down the disease. How long can you in good conscience see that Norwegian taxpayers, with limited resources, are forced out of the country to save the scraps of their health at their own expense, Kjerkol? In order to take control of my own health, I am among those who have now been forced to look beyond Norway’s borders. The aforementioned stem cell treatment is treatment that has been available in several countries for many years already. I’m lucky! My very immediate family is putting up years of hard-earned funds from a completely normal worker’s salary, which was intended for a spacious retirement, to give me the opportunity to ensure a good quality of life. For me, quality of life means, among other things, being able to stay at work for as long as I want. It greatly benefits the community at the expense of my family’s resources. That, Kjerkhol, is unworthy!
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